Thursday, August 30, 2012

Multiple Sclerosis and Divorce

The Unspeakable Bits; From A Life With MS

Having multiple sclerosis does not preclude one from susceptibility to other ailments. In fact, it could be said that – due to some of the many symptoms and complications of the disease – people with MS should be a bit more vigilant in the face of “other” health issues.  So too can it be said of MS complications in a marriage.

There is no need for me to list the reasons that marriages fail. We have all been near enough to friends, family or our own situations to know that these things happen. What is worth noting is the ugly fact that many marriages in the USA end in divorce. The actual rates vary by factors of age, income, length of marriage, etc.

While some studies show the divorce rate for couples with MS (and chronic illness in general) slightly elevated, many others show rates surprisingly near the same as (if not a little lower than) the general population.

Did you know that? I didn’t. I assumed that our rates would be significantly higher.

That said, it may be that a divorce hits a person living with MS a little bit harder – not that anyone goes unscathed by the emotional impact of a “disillusion” (Ha! Who came up with that legal term for divorce? Talk about a truism, “disillusion”).

According to Dr. Rosalind Kalb, in her book, Multiple Sclerosis; A Guide for Families, the divorce rate may be a bit lower for people with MS than the general population because of a few reasons:

1. A person with MS may stay in an unhappy relationship for fear of being alone with the illness.

2. “Well” partners may stay in the marriage through a sense of commitment or obligation.

3. Couples may stay married in order to maintain insurance coverage for the person with MS.

A study I read in Discover magazine about divorce and illness had a rather shocking figure as to gender distribution. In research done by Dr. Marc Chamberlain, it appears that the gender of the partner with the illness (he studied patients with either MS or cancer) makes a massive difference in the rates of divorce.

The divorce rate for marriages in which the man had MS was as low as 3%, while nearly 21% of couples in which the woman had MS ended in divorce.

It seems some men may not have the same “sense of duty” women have…

One factor that hasn’t really been studied is how “happy” the marriages that ended were before diagnosis. This seems like a difficult variable to study because, by the time a relationship is in that place where divorce is being considered, “happy” seems like a distant memory.

Child custody can be a major sticking point for divorce in general.  Throw MS into the mix and things can get ugly in a hurry.

The Society recommends Through the Looking Glass for those families where disabilities play a role.  They can offer legal programs that assist parents, advocates and professionals in the legal and social services system when they are involved in custody litigation involving the child of a parent with a disability.

I’ve also been reading unfortunate comments on my Everyday Health blog and the Life With MS Facebook page about marriages and partnerships with MS that support Dr. Kalb’s first point and that really bothers me.

I see a growing number of people admitting that they are not being treated well by their husbands (and to a lesser extent, by their wives).  Some partners who stick around after diagnosis seem to feel it’s within their rights to belittle, neglect and even abuse their partners who have MS.  Equally as concerning is when I read about someone sticking around because a bad marriage with MS is better than being alone.

Just because you have this disease, it does not make you a lesser person or partner. We should never stand for neglectful or abusive behaviors--from anyone. To that; we’ll chat about abuse and neglect in September’s Unspeakable Bits blog.

But before we go “there,” let’s have a discussion about MS and divorce.

Wishing you and your family the best of health.



You can follow Trevis via, his Life With MS Facebook Page on Twitter and on the “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.

Wednesday, August 29, 2012

Far from perfect

Susan Skoney 

If you asked me today what the argument had been about, I couldn’t tell you. I can only remember it took place in the bathroom next to our bedroom and I had just finished three days of steroids. I was the color of a Maine lobster, sick of feeling sick, frustrated that my husband was arguing with me. So, I did it. Looking right at him, I took my precious wedding ring off my finger, threw it into the toilet and flushed. A split second of gratification disappeared quickly as I watched the symbol of our marriage swirl down the drain. That was four years ago, and my naked finger serves as a constant reminder of how MS changed my life and my family’s forever.

MS is the uninvited guest that invades your home, takes up residence, behaves like a terrorist and will not leave. Every family handles it differently of course. Some circle the wagons, pull together and grow stronger as a unit. Some fall completely apart. I think most fall somewhere in the middle—like us. Dealing with MS as a family is so difficult I could cry and some days I do, a lot. When I was first diagnosed my daughter was just starting to walk and my son was in first grade. Other than a slight limp and tingling hands and feet, I was doing very well. But the day after my first shot, Hannah had to go to Grandma’s because I was too sick to take care of her. This should have been my first clue just how bumpy the road ahead was going to get. However, my daughter starts ninth grade next month, my son is going to community college, and my husband is still devoted to us all, except when he is threatening to leave. Let’s hope that’s his way of venting.

When the children were little, we shielded them as much as we could so as not to alarm them. But there were bound to be times we couldn’t. I often wondered what my children were thinking when a nurse would come to give me steroids? Or later on when I would be hooked up for two or three hours getting IVIG? What were we thinking? Looking back, we should have been more direct as it might have made them more understanding as my disability progressed. But who knew I would wind up in a wheelchair? It’s tough when you have to rely on your kids to help you pull up your jeans and get out of the bathroom. Then when you have to put your parent hat back on and demand that “Jersey Shore” get turned off immediately and that homework get finished. Disability undermines authority—at least in my family. We are working on it.

My darling daughter once told me I wasn’t like a real mom. Ouch! I most certainly am a real mom. A mom with MS. To many of us, June Cleaver was a real mom. But can you picture June meeting Ward at the front door with her pearls slightly askew and, after taking his hat and briefcase, explaining she was too exhausted from her MS to make dinner? Of course you can’t. June Cleaver was a make-believe mom with an idealized TV family. MS is a great thief. It steals our personal independence and, if you let it, the relationships that we prize the most. Our family is far from perfect (except for my husband Michael—ask him, he’ll tell you), but with perseverance, forgiveness and a basic love for each other, we gather strength and energy to make it through yet another day.

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Learn more about how MS affects the whole family in the Fall 2012 issue of Momentum

Monday, August 27, 2012

A Family Legacy

Marie Cooper
Writer, MS Renegade

I was fifty years old when I was diagnosed with MS. A bout of Transverse Myelitis landed me in the hospital and I found out I had probably had MS for years, as my spinal cord was riddled with old lesions.

But those previous years had seemed healthy. Irrationally, I truly believed that was because I had refused to ever be sick. As a single working mom, I had neither the time nor the patience for illness. I was crazy enough to believe I actually had control over it! So my children’s image of me was (and ironically, still is) that of a strong and indefatigable parent. There was never a day I wasn’t up before them and in bed after them. I never ‘rested’ or took naps.  My type-A personality kept me driven and constantly on the move, always juggling a dozen tasks at once. This is just who I was to them. That was my normal.

I was big on educational trips, so we tramped through the streets of London, New York, Washington, Philadelphia and local towns and parks and museums, while I kept a running commentary on what we were seeing. (My penchant for turning every drive into a history lesson became a family joke as they got older.) Sometimes we would take a tour trolley or bus, but mostly we walked. I felt walking was the best way to absorb the atmosphere of a place, feel its energy and see its historic aspects close up. And besides, I loved to walk. The kids would often be grumbling behind me as to when we would reach our destination. “Just a few more blocks!” I would cheerfully reply, whether it was two more or ten.

Then I got sick. And everything changed.

By the time I was diagnosed, the children were all grown. They had experienced me as a healthy individual for their entire lives. But over the past six years I have acquired three beautiful grandchildren. I could still walk when my first grandson was born in 2006, but he doesn’t remember that. And my two newest little ones will only know me to be significantly disabled.

A friend and I were recently talking about the legacy we will leave our grandchildren. Not tangible things, but the essence of who we are, what we value and what we want to provide as a model for a way of living. I loved the stories my grandparents told me about their childhoods and youth at the beginning of the last century, stories that made them real to me as human beings, not merely my elderly Grandma and Grandpa. Knowing those details about their lives is a real gift now that they have passed away.

My friend told me about a series of letters her father had written to his grandchildren. They treasured these pieces of history and connections to him. That inspired me. I want my grandchildren to have a more three-dimensional image of me. While it is good for them to be accepting of my limitations and to be understanding about people with disabilities, I don’t want to just be the Grandma in the Wheelchair. So I decided to start writing to them, telling them stories of my life before MS.

I will tell them how I ran and played as a little girl, just like they do. How I took care of their mommy and daddies when they were little. How I ran their parents ragged through cities throughout the world. How we had fun as a family before we had to learn to have fun in different ways after I became more disabled. I will also share some of what it has been like to have MS, so hopefully they will keep up the fight.

I am keeping it simple. These aren’t Pulitzer Prize contenders. The kids might not even be interested for a while. But someday it will be nice for them to understand that I was a multi-faceted person. Hopefully it will help us stay connected as a family for years into the future, and be something that they can share with their own children. It will be part of my legacy to them, one that is a true reflection of the whole and complex person I am.

Learn more about how MS affects the whole family in the Fall 2012 issue of Momentum

Friday, August 24, 2012

Back to School Time and Multiple Sclerosis

It's the time of year again when we send our kids off to school after a long summer break.  For most people, there is an element of relief to having at least part of the days be kid-free. For people with multiple sclerosis, many of whom experience heat intolerance and all of the heightened symptoms that come with it, summer can feel like a marathon. Add a couple of young children to the mix and the days can seem torturous, all while you are trying to make things "fun" and "normal" for your family. The beginning of school, for me at least, feels like the finish line of the summer marathon.

However, as nice as it may be to turn the little darlings over to trained professionals for the bulk of the day, back-to-school time comes with its own stressors. Suddenly, schedules get tighter, mornings can be more frantic, there are more things to remember, lunches to pack, homework to check – the list goes on.

Continued heat intolerance (it's not cool yet in most parts of the country), fatigue, cognitive dysfunction and all those other symptoms that impede getting things done combine to make some of the school demands seem overwhelming at times.

We all find a way to cope, but I have compiled a list of some of my tips to making the transition back to school as smooth as possible:

Have a strict schedule – then stick to it. I'm not kidding. Take a piece of paper out right now and write out what a typical weekday will look like. On days where there are afterschool activities, modify the schedule and write out this version. You will not believe how much this helps – if you do this religiously, it will help you and the rest of the family stay calm. Try it out for a couple of days, adapt it as necessary, then print it out and put it in a visible spot. All anyone has to do is look at it and know where they are supposed to be and what they are supposed to be doing. For tiny kids, you can even make one with pictures (even though they can't tell the time, you can show them that bath comes after dinner and before reading a bedtime story).

Make things you do every day easy. I have been guilty of repeatedly doing things "the long way," even when there are simple solutions that will make things much easier. I am trying hard to change that this year. I had hooks for backpacks put in the hall closet. I made a designated spot for kids' eyeglasses, where they must be put if they are not being worn. I have come up with a couple of lunch combinations that I fall back on, rather than opening the refrigerator at dawn and wondering what I was going to pack. All of these are simple things, but think about every minute that you may have spent looking for library books or trying to find matching socks while the morning clock is ticking and everyone is getting frustrated and upset. Now multiply those minutes times 180 (average number of school days in a year) and you'll see why simplifying and organizing is key.

Have your kids help you find solutions. My girls are in first grade. They just started school and I am trying to figure out what works best for them in terms of getting homework done or getting ready in the morning. They have given me some excellent suggestions. I think they are more likely to follow through on their own ideas.

Don't have too many afterschool activities. This is pretty simple to say and harder to do. Still, in order to be good parents, we all have to have something of ourselves to give. This is difficult when afterschool hours are all spent frantically driving kids around, sitting in the heat, trying to keep track of uniforms, and condensing family time into smaller slots. I suggest allowing one or two activities per semester, timed so that multiple children don't have conflicts in their activities.

Plan your energy expenditure. As much as possible, plan your schedule to work with theirs. By this, I mean take a rest or at least have some quiet time before you see your kids. Many days, I have rushed around to get things done before school gets out, then it's time to go pick the girls up and I have nothing left to give, energy-wise. Now I try to do anything hectic in the morning and leave the afternoon for more mundane and less exhausting tasks, so that I am ready for switching gears after school.

Bottom line: Part of our job as parents is to make school a positive experience for our children. By providing a stable and calm home environment and showing kids how to organize their time, we can support them in their school endeavors and significantly cut down on our own stress.

Tuesday, August 21, 2012

The Family Meeting

Kelly Nieuwejaar

Keeping up with household chores isn’t easy. But when you have a spouse with MS, it becomes as much of an emotional effort as a physical one. Some days I fear that one of the cats might disappear under an avalanche of dirty clothes. I try not to notice the inches of dust on the coffee table or the tufts of cat hair floating across the hardwood floors.

It’s the summer so it’s a tough(er) time of year for many people with MS. I don’t want my husband to do something he can’t really handle just to make life easier for me — not at the expense of his limited energy. At the same time, I feel resentful and consumed by guilt from wanting to ignore his disease and demand some help. 

The line between what my husband can and cannot take on is still so blurry to me. So much so, that I end up saying “I’ll handle it.” But the truth is, I feel like I’m drowning and I just don’t know what to do or how to handle asking for help while being sensitive to his limitations. I start really focusing on his disease. My thoughts go from, “I sure wish he’d put his socks in the hamper,” to “MS is something I can’t handle; I can’t do this!”
Thankfully I recently got some great advice: Set weekly family meetings. On Sundays we usually sit together and plan the menu for the week ahead so I can do the grocery shopping. Now we tack on our family meeting at the end. I tell him exactly what I need help with and he tells me what he can realistically manage (or not). Nothing gets pent up on my end and we work out ways to make some things easier for him to handle. I also learn more about what he needs and how I can help him. I feel so relieved and life at home is more manageable. My husband feels like he’s contributing more, too. Everybody wins!

Kelly Nieuwejaar lives in southern Maine with her husband, Khoren. Read another article written by Kelly and learn more about how MS affects the whole family in the Fall 2012 issue of Momentum

Tuesday, August 14, 2012

Coping with a crisis when you have multiple sclerosis


I used to think that I was pretty good in a crisis. I could calmly and quickly assess a situation and come up with a mental flowchart of what had to be done, complete with alternate plans in case one of my steps didn't work out. More than once, someone would say to me that they wish they could be as logical and composed as I was when things needed to get done quickly and decisively. Of course, that was the old me, the person without multiple sclerosis.

These days, I am no longer the paragon of composure during times of stress. Quite the opposite –if more than one thing requiring my attention is happening at one time, I freeze, my circuits overloaded. I would never want to see a video of myself during these times – it would undoubtedly show someone who is so confused that she becomes dysfunctional, a person prone to lock herself out of the house or unable to find her car keys when they are most needed.

Recently, I had to run the dog to the vet on an emergency basis, make a call before I left, wrangle my young twins into clothes and then into the car, and get all of this done within an hour, as someone was coming by the house to fix something. These "normal" tasks had me standing in the middle of my kitchen, holding keys to the wrong car, rotating in slow circles and rubbing my forehead. Eventually, I was able to mobilize myself, but I had wasted valuable minutes trying to figure out what to do first. If this had been a true crisis, it would have undoubtedly taken much longer, with more mistakes along the way.

Undoubtedly, this inability to multitask in an urgent situation is related in part to cognitive dysfunction, which makes it difficult to hold onto more than one thought at a time or process things quickly.  There are a couple of tips that I have come up with to help "unstick" myself and get moving under stress:

Take a minute and assess the situation. In the vast majority of situations, taking 30 to 60 seconds to think things through will actually save time. Take a deep breath and mentally go through all of the steps that you will need to take and jot them down. Picture yourself doing the things in your plan, including making necessary calls, locating destinations on the map, bringing particular items along.  Think through what you are going to say to people whom you need to call. A quick mental run-through will make you more efficient when time is of the essence.

Make it quiet. Turn off all music, turn off the television. Tell people to stop talking to you. Go in another room, if necessary. This will greatly help you figure out what you need to do.

Ask for help when possible. There have been many times when I told a friend or my husband about a seemingly impossible situation and they said, "Why didn't you call me? I could have helped." It helps just to talk through something with someone as you are forming your strategy for addressing your problem. Often, others who are not wrapped up in the situation at hand can offer very simple suggestions that will reduce stress and effort.

Stay as calm as you can. I know that my MS symptoms become much more noticeable when I get worked up. Increased tingling, tremor, spasticity or headache is not what anyone needs when they are trying to act under pressure. While it is easier said than done, staying calm in a crisis will improve your chances for success in taking care of the problem.

Bottom line: These tips do not just apply to people with MS, as I think many people tend to "short-circuit" when things become urgent. However, for people with MS, the extra challenges of cognitive dysfunction and impact of stress on symptoms can make crisis situations even more difficult. By approaching a situation calmly and strategically, you can build confidence that you can handle things that life throws at you, despite your MS.

What about you? How do you handle stressful situations? Is there a particular instant (that you handled well or poorly) that sticks out in your mind? Share your stories and tips with us.

Tuesday, August 7, 2012

A Piece of Peace

Did you know that acceptance is a choice that you have full reign over? Now they tell me! I do have some choice in this horrific disease.

But, there’s a catch.

I saw a tall case of stairs the other day, it nearly brought me to tears. Why? Well, mainly because today I’m downgraded to a wheelchair. While not too long ago I would have happily opted to take on those stairs, now I can’t. So, in the cloud of my sorrow, before I could even collect myself, my husband dared me to think about what I could do. All I wanted was to pay respect to the part of me that’s likely gone forever, but dwelling on those memories encourages my denial of the acceptance of what is now.

 “Of course there is no formula for success except, perhaps, an unconditional acceptance of life and what it brings.” ~ Arthur Rubinstein

I have heard that acceptance is a roadway that can lead to enduring happiness. If that’s the case can someone please get me the Book of Acceptance 101? Because every time I think I’m there I get a nice slap in the face. They say that part of the beauty of life is that it’s forever changing.

Well, I should have one up on that because I’m living with an unpredictable incurable disease. I have no choice but to go with the flow. If I don’t I just create more turbulence for my own self. And who needs that? I know it’s tempting to lean towards anger and frustration. But we help ourselves so much more if we don’t.

“We need to develop the habit of looking at whatever happens through a positive mindset, instead of a negative and defeatist one.” ~ Ana S.

Now to be honest, I’m still working on that one. I mean I’m not a pessimist, but that’s a tall mountain to climb.  I also must reluctantly admit that things and people have come into my life since my diagnosis that otherwise would not have - a host of supportive others battling this very same thing. People who understand; first hand. Not exactly a reason to elect to have MS, but it’s what happens when you slowly seek out the positive in a not so positive situation.

The fact is I can no longer climb that monstrous flight of stairs, but there are still things that I can do. If I can just hold on to that frame of mind, life becomes more bearable for both my husband AND me. After I dried my eyes, passed those darn stairs, and remembered my abilities, I discovered to my own surprise … a piece of peace. Who knew?

I guess I should again grudgingly thank my husband.